”It is a user-friendly guide, a set of plans, instructions and ideas for aiding
individuals with all forms of Periodic Paralysis, to better manage their
symptoms in natural and common sense methods. It is a workbook with a set of
tools such as charts, forms and even a medical journal, with clear instructions
for completing and using them. Each is designed to be individualized and may be
utilized for the various plans or sections of the book. The charts and forms
may be scanned and used separately or the pages may simply be completed in the
book itself for keeping all medical information in one place. Easily
transportable, this book is also a handbook and can accompany each visit to
doctor appointments, the ER or the hospital. This guide may stand-alone or may
be used in conjunction with the first book about Periodic Paralysis, living
with Periodic Paralysis: The Mystery Unraveled. This guide, workbook and
handbook is designed to assist individuals with all forms of Periodic Paralysis
to ‘be the best they can be naturally.’”
This is the Outline for the Plan:
(From the book)
Getting a Clinical Diagnosis
The Plan
Process of elimination
Gather the facts
Lab work
Periods of
paralysis, documented
EKGs
Oximeter
recordings
Genetic
testing?
Previous
medical records
Chart the
triggers
Gather and chart family information
Introduction:
There are two methods used for
diagnosis of the various types of Periodic Paralysis; one is through a genetic
test, which studies one's DNA. If a mutation is found the person receives a
"genetic" diagnosis. If a person is diagnosed based on their symptoms,
once all else has been ruled out, it is called a "clinical"
diagnosis. Too many doctors will not give a clinical diagnosis once everything
else has been ruled out and are eager to diagnose a person, especially women,
with a mental disorder such as "conversion disorder" and then
prescribe a psychotropic medication which makes the symptoms worse or can
actually kill someone with certain forms of PP.
The truth about the
genetic mutations for Periodic Paralysis and Andersen-Tawil Syndrome:
More than 40% of all individuals with Periodic Paralysis have a form, which has
not yet been discovered and must therefore, be diagnosed clinically, based on
symptoms and characteristics.
The other issue is that up to 50% of those with PP have potassium shifting in
normal ranges, rather than low or high, which causes their symptoms. Without a
test proving low or high potassium, some uniformed doctors refuse to diagnose
although everything else is ruled out and there are clearly periods of muscle
weakness and/or paralysis.
It is my belief that too much
emphasis is placed upon the genetic testing, because only about one half us
will have a genetic mutation if we are tested genetically. Diagnosis needs to
be based on symptoms and characteristic once all else is ruled out.
Getting a clinical diagnosis,
based on our symptoms, is the most important step we can take. Once it is on
paper, we are at least believed for emergency care issues, hospitalizations,
possible medications, school issues for children, insurance, validation,
vindication, disability and much more.
It is an individual decision to do genetic testing once
one has a clinical diagnosis and best made knowing all of the facts.
The Plan
Before I had a diagnosis and I
was very ill, Calvin was beside himself with worry because of the severe
paralytic episodes I was experiencing four and five times a day and every
night. I was having difficulty breathing during them. He met with a technician
for medical equipment when we were trying to get oxygen and he told her the
story. She told him the best way to get the help we needed and a diagnosis was
to, “Hit them (doctors) between the eyes with the facts.” That is just what we
did!! Based on that idea I have created the plan for others to use to gain a
diagnosis. It is presented in an outline format to make it easy to follow and
to use as a checklist.
~~~~~~~~~~~~~~~~
You must gather all of the facts:
Ø
It is important for everything else to be ruled out. Your PCP and a neurologist do
these, because most of the symptoms resemble neuromuscular disorders. The tests
ruling everything else out might include but are not limited to:
§
Lab work of all types,
·
Blood
·
Urine
§
MRI's,
·
Brain
·
Spine
§
Spinal taps,
§
X-rays
§
EEGs
§
EMGs
§
EKGs
§
CMAPs
§
Muscle biopsy
(Some of the tests above may show
changes that can be markers for PP).
v Most doctors diagnosing PP want lab
work showing either:
Ø Paralysis during shifting in normal
ranges
Ø Paralysis during shifting in low
potassium and/or,
Ø Paralysis during shifting high
potassium
§
This is done by obtaining serum potassium levels
·
May need to be done several times until a baseline is
established
·
Then during episodes every 5 to 10 minutes...not just one
blood draw...there is no way to see the shifting otherwise.
·
It may be necessary for hospitalization in order to do this
while in the paralysis.
·
May need to be done for more than 24 hours until each is
documented, during the episodes.
·
If the shifting is in the normal ranges, it may never show
up during tests, unless it is done every few minutes.
¨ 50% of PP patients may not have potassium shifting out of normal
ranges
¨ ATS patients may shift all three
ways.
Ø
However, the latest information for diagnosing
PP based on potassium levels in blood serum is as follows:
§
The potassium in the blood does not always shift
above or below normal ranges in 50% of patients experiencing muscle weakness or
paralysis or it shifts so quickly that it cannot be measured. Doctors need to
diagnose a patient with Periodic Paralysis based on the patient’s symptoms,
specifically, heart symptoms on an EKG and the muscle strength or weakness and
history of episodes of paralysis.
Ø *** The
information above needs to be shared with your doctors. Most do not understand
these concepts. ***
v
There needs to be periods of paralysis, either total or
partial, which can be documented (or progressive, gradual, fixed muscle
weakness, all other things ruled out).
Ø
Videotaping is the best way to do this.
Ø It may be necessary for
hospitalization in order for doctors to see an individual while in the
paralysis.
Warning!
Under no circumstances
should an individual provoke his or her symptoms or an episode of paralysis by
omitting medication or ingesting foods or perform activities, which are known
triggers. This is a very serious thing to do and can lead to death. Please read
Chapter Twenty-Nine for more information on this subject.
v
ECGs or EKGs consistent with "ion channelopathy",
Periodic Paralysis or Andersen Tawil Syndrome. For specifics see Heart Issues
in Chapter Nineteen.
Ø Needs to be done while in the
paralysis so it may need to be done for more than 24 hours until each is
documented, during the episodes.
§
Holter Heart Monitors are the best method.
v
Oximeter (oxygen) recordings
Ø
Indicating, levels dropping during paralysis.
Ø
If in an advanced case of PP, it may show hypoventilation.
v Genetic testing is available
Ø Not necessary, but helpful for
treatment and prognosis
Ø See below for Specifics for Genetic
Diagnosing of PP
§
30% of all people with PP do not have identified mutations.
Ø See below for Specifics for Genetic
Diagnosing of ATS
§
30% - 40 % of all people with ATS do not have identified
mutations.
v Gather all previous medical
records.
Ø Be sure to ask for all doctors'
records from each appointment you attend.
Ø Get all lab records, x-rays,
hospitalizations, etc.
v Chart the triggers for the
episodes.
Ø See “Triggers” in Chapter Seventeen
and “Discovering Your Triggers” in Chapter Twenty-Two”
Ø Documenting an increase of episodes
after eating carbohydrates or red meat, after exercising or after taking
certain medications is important for being able to control the episodes and
letting the doctor see what the triggers are for a diagnosis.
v Documenting a reduction of episodes
when using potassium is good. This can indicate the loss of potassium after
shifting and may indicate low potassium levels.
v Gather a team of doctors.
(Knowledgeable about PP or willing to learn)
Ø PCP
Ø Neurologist
Ø Electrocardiologist
Ø Nephrologist
Ø Endocrinologist
Ø Counselor or therapist
Ø Others as needed for symptoms
Ø MDA doctors if possible
v Gather as much medical information
as possible from family members who may have symptoms
similar to Periodic Paralysis. It has a hereditary component.
Ø If one suspects Andersen-Tawil
Syndrome, gather as much medical information as possible from family members
and note the characteristics/symptoms. Create a family flowchart with this
information. Adding pictures can be helpful in demonstrating the
characteristics.
Each of the steps outlined above
is further discussed and explained in detail in the books.
The
bottom line is that the best way to get a diagnosis is to get as much
information together as possible to prove your case. Video tape the episodes,
keep a journal, put together a notebook with all of the testing results.
Include ER visit reports, hospital records, doctors notes, records of your
vitals, and more depending on your symptoms and your particular case. Both
books have charts, forms and more to use for this purpose, including all the
instructions.
Once you have all of the information together, you
can:
“HIT
THEM BETWEEN THE EYES WITH THE FACTS!”
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